Autism Night Before Christmas by Cindy Waeltermann

This was passed on to me through another mom of a child with autism


AUTISM NIGHT BEFORE CHRISTMAS
BY CINDY WAELTERMANN

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.
"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent…"
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!
Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned…….

Audrey Makes A Letter To Santa

Holidays are hard for families with kids with special needs. This year I have learned that it is not just my autistic daughters who struggle with the holidays.

For Abigail and Allie, they struggle with the crowded stores, the extra time in the car due to all the holiday travelers, and seeing groups of people at parties that they are not used to.

They struggle with christmas trees and lights, the feeling of touching wrapping paper, the sounds of bells outside stores, and their changes in routines.

Abigail will struggle with 2 1/2 weeks off of school and the routine she craves so much. Allie will struggle with why her sisters are home when she is used to them being at school. She will have missed therapy sessions and the craziness of a routine that will change from day to day.

My two daughters with autism will not know why they need to sit still to have christmas pictures taken or why they have to open gifts. They will wander around our toy room on christmas morning while we "open" their gifts and show them as they pass by.

But for our middle child, Audrey, she is really into all that goes with this holiday. She wants the christmas tree lit up and wants to see Santa. She is learning how Santa delivers presents and is actually worried that she will miss his visit when she is at school.

Today, I had her help me fill out her christmas letter to Santa. At the top of this post you will see her wants for her christmas gifts. It is a telling letter of this little three year olds life. She amazes me with her maturity and compassion but also breaks my heart with the same qualities.

We plan and plan out activities for the two girls with autism to make this season less stressful for them. Now it is time to plan Audrey's season full of fun activities that show her she does not have to be the caretaker of her sisters at this time.

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A Long September and Maybe A Little Growth in October

September was a long month.  So glad to say I made it through, barely.  September started with Abigail starting back to school for her last year in her AU Pre-K classroom.  I was so glad to be getting her back into school, into a routine, back with teachers she knows and loves. 

Over the first couple of weeks of school, Abigail's ADHD has gone crazy.  She is sleeping on average two hours a night.  She is running wild and not focusing on anything.  Mommy is exhausted and wondering what will happen if she is always like this.  Will I be able to keep up to her in 5, 10, 15 years if this behavior stays the same? 

We are now three months into the school year and I am sad to say that I see huge progress with some of the other kids in Abigail's classroom and not so much with Abigail.  She has now become the wild child in the classroom.  I am hopinig with time this will change and I know that with autism, there is always times of huge progress and times where the progress stalls.  This too shall pass.

Audrey was evaluated for the school's pre-k program this summer and in September, we were told she has developmental delays.  She is behind in her speech development, fine and gross motor skills.  In other words, yet another not typical child.  She is getting therapy at the school and is in school three days a week now.  She is doing so wonderful with her therapies and classroom behavior and we are very proud.  We are hoping with each new day, she will continue to make amazing progress and be ready to be mainstreamed by the time she hits kindergarten.

The day I had been dreading all summer came on September 16th.  I could feel myself getting more and more nervous and anxious with every day that passed.  On September 16th, not only did Allie turn two but she also was diagnosed with autism.  During the psychologist evaluation, I could feel myself wanting to cry but I don't allow myself to do so in front of others.  It is something I really need to work on but I just can't allow myself to do so because then others would have to feel sorry for me and I do not want any one else to worry about me because of my daughter's disabilities.  The psychologist visit came and went.  Being the person I am, the moment the psychologist left, I had to run out to the store and get the cake because well we had a birthday party to celebrate.  I only cried once that day.  On the way to the store, I heard "She qualifies for an autism diagnosis" over and over in my head. 

For most people, these kids are "cases" or "patients" or "students".  For me, they are my babies.  Getting a diagnosis is so difficult.  It takes away what you had planned for your children's lives.  Your whole outlook on their life and their paths changes.  Not one day has passed since Abigail was diagnosed where autism did not rear its ugly head in my life.  I am a mom of two daughters who are beautiful, smart, talented, funny, and who also happen to have autism. 

So I am now a special needs parent.  I have found a strength inside of myself that I did not believe existed.  These girls have tested me.  They gave me strength to fight for them.  They have given me patience to go on their paths at their own pace.  I am not the emotional mess I was after Abigail was diagnosed.  I have moments that are hard.  I have days that I don't think I can take one more meltdown or scream.  But I keep going on.  I have a choice....let this destroy me or accept this for what it is and go on.  I need to accept this and embrace this for my own sanity but also for three little girls who need me to show them what strength is and that in life, there are no guarantees and you have to roll with what you are given.  I hope they grow up to know that life is difficult but you do the best you can with the hand you have been given. 

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.

A Tale of Two Heathers

Reflection is an important part of being a special needs parent.  I find myself often reflecting back on Curly's life.  It is a short life so far, only 4 1/2 years but those years have been packed with so much emotion and just life.  Up until a few months ago, I never looked back on my life.  If I remembered a time that was of any significance to me, it was because it was something that included my husband or children.  Over this summer, I have come to realize that I am two Heathers. 

The first Heather is the wife.  The woman who balances the checkbook, keeps the dishes and clothes clean, and occasionally cooks (sorry for those who have to eat when that happens).  She is the mom of three little girls under 5.  She is the warrior advocate for her child with severe autism.  She is the person who makes all the calls, knocks on doors, and harasses the special needs community until all my children get the services they deserve.  She is the taxi to doctor's appointments, school, and gymnastics classes.  She is the woman that acts brave and strong.  She does not let anyone see the weaknesses and the stresses of living the life she has to live now thanks to a little thing called autism.  She goes on her with her daily activities and demands with a smile but it is a facade because no one can see the emotion behind the wall I have put up.

The second Heather is drained.  She is exhausted from the three hours of sleep she lives on every day.  She is anxious and worried.  She worries about today but also is so scared about the future.  She obsesses over every single decision she has made on any given day.  She has a bigger "to do" list than she ever could have imagined.  She blames herself for her children's struggles every day.  She is an emotional mess.  She cries, A LOT.  When she has time to think, her mind always drifts to the "what if's" that autism has brought into her life.  She needs stability and structure just as much as her autistic daughter.  She is not strong.  She wonders if she can do this day after day.  The daily pressures of having special needs children are literally eating away at her.  She feels alone even when she is surrounded by people.  She has so much baggage she carries around every day that it feels like she is sinking.

Are either one of these Heather's the real one?  Do those around me know that I put on a smile for them when I feel like crap inside?  Can they see inside me and know that I am crumbling?  Can they see that I need a hug or a shoulder to cry on but can not ask for it? 

I lost the "real" Heather the day Abigail was diagnosed.  I do not know who that person was before that day.  All I know is that I had to change to move on from that diagnosis.  But deep down, I miss whatever I was before that day nearly three years ago.  But at the same time, I do not know if I can get her back.  I HAVE to be everything to everyone now which leaves very little time to be anything else. 

Maybe one day, I will know who I am, what I am about.  It will take a lot of reflection on my part once my kids have grown a little more and can do more for themselves.  As a doctor once told me, "You are not running a sprint, you are running a marathon.  So slow down, smell the roses, and take time for yourself".

A lesson I really need to learn.

A little self revelation

When Abigail was still a tiny baby and then a toddler, we could hide her delays and eventually her autism.  Those close to us knew that she had major delays and autism but the general public did not or so we thought.  One day when I had to take Abigail to urgent care for yet another ear infection, I was called out on my deceptions. 

Abigail was about three years old.  She obviously had huge delays.  She only ate pureed foods, was not potty-trained, did not communicate in any form, was completely non-verbal, and had major tantrums for no apparent reason.  Still, I thought the general public could not tell that it was autism that did this to her. 

As the nurse took her vitals, the nurse looked at me and said, "She has autism, doesn't she?"  I said, "Yes".  But in my mind I was wondering how in the world she was able to diagnose this in my child.  The nurse says, "My friend has a son with autism and he has that same look in his eyes".  I know the look she is describing. 

The look is a blankness.  The eyes have a lack of focus to them.  The eyes look over you, not at you.  There is not a stare, but a glance.  It is a sense of I am here in this room with you, but not present in what you are doing.  I knew the look all too well.  I had been living with the look for almost all of her three years of life.

I remember coming home and being mad and sad and a feeling of being caught in a lie.  I came home and told my husband, "Can you believe she knew Abigail had autism just from looking at her for a couple of minutes?"  My husband looked at me like I was crazy and said, "She does have autism, so what is the problem?" 

It was my problem because I did not want others to judge her abilities because she had autism.  I did not want others to give me the sympathy look when they saw us together.  I did not want the general public to be able to know she was not the "typical" child.  I wanted to protect her from any strange looks, rude comments, basically anything or anyone that could possibly hurt her an any way. 

As she has gotten older, I realize I can not do that.  There are going to be comments, stares, and criticism.  I now am able to tell others she has autism before the stares and comments come.  I am not embarrassed or ashamed of that label.  I, like all parents with kids with autism, wish she did not have that label but it is our truth.  We can not hide from the truth or pretend the truth does not exist.  I state very clearly, happily, and proudly...My daughter has autism.  She is an amazing little girl who constantly surprises me with her abilities. 

For those of you who do not know much about autism, I urge you to research it.  We are out there in your communities and our children are in your schools.  We only want acceptance and understanding from you.  We want the same things you want for your children.  We want happiness, friendship, love, and support for our children.  We don't want you to feel sorry for us, just be there for us. 

My daughter has made me grow in so many ways.  She taught me that her diagnosis and label was not the definition of her life.  She has made me stronger, wiser, and a lot more patient.  She has made me fight harder for what she deserves and to stop and smell the roses.  I wish this self revelation on all parents but especially all of the moms and dads with special needs children. 

Old Memories

Yesterday, I stumbled upon some old videotapes from Abigail's first two years.  I had stuck them away in the closet because I could not watch them anymore.  I could not see the baby who I had such high hopes for turn into the toddler who has severe autism.  I could not watch these because everytime I watched them, I was reminded of her disability.  A look in the eyes, a lack of speech and attention, the repetitive play, and the outbursts all just shout autism to me.  So I stuck the tapes away and wondered if I ever would be able to view these again. 

I guess yesterday I felt strong enough to view them.  I started with Abigail's birth.  What a gift I was given almost five years ago.  I really did not know what I was doing with her or where our future together would lead us.  She was just my precious little girl who I loved more than any other thing in my life ever.  I wanted the best for her.  I would do anything to make her life as good as it could possibly be.  I loved holding her, rocking her, singing to her.  I just was so in love with this little creature and the moment she came into my life, I felt a completeness that I had never had before.  So many memories on that first tape.  A time in our lives that was really peaceful.  No delays, diagnosis, or therapies to deal with.  It was just us....our family of three.

The next set of tapes revolved around her first birthday.  She had some serious delays by this time.  She did have a couple words and was babbling.  She had full fledged sensory issues that were pretty evident as she was forced to touch tissue paper and cake.  I did not realize it then how severe her behaviors were.  I guess I was in denial because looking back at the tape now, it is clear to see.  Sometimes, life is too hard to face and a little denial for a little while helps you deal with each new day.  This tape was full of that same blank look in her eyes as we see today.  It was full of a little baby that did not want to be surrounded by people.  She wanted to be alone.  I wish I could have seen her with my eyes wide open then.  She had clear cut signs of autism.  Looking back, I think we probably did see it but couldn't or didn't want to admit it.

Our next round of tapes were taken shortly before our daughter Audrey was born.  Abigail was around 15 months old.  She was playing a game of basketball with daddy while I filmed.  After one basket, she came over to me and said, "I did it".  It was the last phrase she would say.  There have been no consistent words since.  She went silent shortly after this video was shot.  No babbling, no sounds at all.  I remember being devastated that she lost words.  I remember the anxiety and worry as every month went by without any words.  As I sat watching this video, I wondered, "Is this the last time I will hear her talk?"  I would literally do anything to hear that sweet voice say any word.  She was not only talking in this video but also playing a game with us.  She wanted us involved in her play.  I miss that.  Once in a while, she will let us into her world.  But it is few and far between.  I miss my little girl that babbled, called for daddy, and let me play with her.  I can only hope now that eventually she will return.

The last video took place around the time Abigail turned two.  One look at her and anyone could tell the autism was taking over.  She was silent.  She sat in a corner looking at a book backwards and rocked.  She did not play appropriately and wanted to be left alone.  She would throw major tantrums.  Not the typical two year tantrums either.  She would meltdown without warning and it could last up to four hours.  She did not want to be around her sister Audrey who was then about 5 months old.  She would stare at the TV for hours without attempting to let you into her world.  It was a very hard time.  She had been diagnosed a few months earlier and it was a dark time in my life.  I was trying to figure out how and if I would be able to parent a special needs child while still giving her baby sister the life she deserved. 

Looking back at these tapes, I see the love I have for that child in my eyes, in good times and bad.  I see how much I really enjoyed being home with Abigail for that first year before the signs of autism appeared.  I see how hard her behaviors were two to three years ago and how far she has come.  I see how far I have come.  Being able to watch these tapes is a huge step for me.  I have accepted Abigail in every way.  My first born has taught me a lot about myself and how to parent my other children.  I love this little girl with all my heart, always have and always will.  Thank you Abigail for letting me come along for the ride.

Another Year Bites the Dust

Curly just finished up her second year of pre-k.  One more year and she will be off to kindergarten.  Obviously, I know it will not be the kindergarten class I once envisioned for her but nonetheless a big girl, kindergarten class.  On the last day of pre-k, I looked around at Curly's home away from home, and saw how much all of the kids have grown.  They are all more independent, more well behaved, and a whole lot happier in their own skins.  I am amazed how much smarter they all were after this one year of school.  Abigail's fantastic teacher gave us a disc with pictures on it of the kids throughout the year.  I saw a curly headed little girl who was still very much a baby turn into a young girl who really came into her own in a short nine month period.

Abigail came into this school year in a bad way.  She had developed a biting issue over the summer and also developed quite difficult mood swings.  She would meltdown all day, every day.  She was and is nonverbal and did not know how to tell us what was bothering her.  Imagine what it would be like if you were upset and needed help, but had no way of telling anyone what was wrong?  She was just so frustrated.  It was heartbreaking to see my baby withdraw further from us and to see her become someone that we did not even know. 

A typical day in our house started with a happy, smiling curly.  At any moment, she would start to scream, throw things, pinch herself, pull her hair, throw herself on the floor or bed and cry and scream until she could not catch her breath and at times, throw up.  This happened, some days, five to eight times a day.  Sometimes, we might only have one or two meltdowns.  Her meltdowns could last anywhere from 10 minutes to four hours.  The meltdowns controlled our lives.  It controlled every aspect of our home life.  We, as parents, were exhausted, confused, and heartbroken for Curly and our other children.

With the help of therapists, teachers, psychologists, and finally developmental pediatricians, we found some answers.  We were told that we were not alone.  A lot of children with more severe autism, have these mood swings.  The professionals guided us to get her the help she needed.  Controversial or not, we chose medicine to help with the mood swings.  If you don't believe in children taking medicine, all I can say is this.  You were not in my home.  You did not see how this was affecting every member of my family.  You can not judge our decisions until you are placed in this situation. 

Much to our delight, Abigail responded well to medication.  She had no side effects and her moods stabilized.  The meltdowns went from an everyday thing to a couple times a week thing.  Now the mood swings are a couple times a month.  Our other children are not scared of Abigail any more.  Abigail has improved at school.  She is happier and back to the smiling little girl that we have always loved. 

Towards the end of the school year, she started to have more focus with her task work and she participated in circle time more.  She returned to the happy toddler we thought had left us back in the fall.  She had enough focus to improve her joint attention and became a lot more social with my husband and I and her sisters.  We feel like we have Abigail back.  She looks at us, smiles at us.  She comes to us when she needs something.  She will play alongside her sisters.  She kisses and hugs us.  She lets us get close to her and become a part of her world.

We are delighted with her progress.  She still has good days and bad days.  I believe she probably always will.  The good days so outnumber the bad ones these days.  Our girl is happy and healthy (for the most part), and that is all I could ever really hope for. 

The next school year will be here before we know it.  This next year will be about her next transition.  She will be ready to go on and by then hopefully, her daddy and I will be too.

Autism X 2

It has been a while since I have posted anything new.  I have been on a wild ride that began about 2 months ago.  I have been doing the best I can in these past two months to just survive day by day. There have been very few great days in my life in the past two months.  What there has been is lots of tears, worry, anxiety, and a lot of doubting of my own capability. 

At the beginning of April, I took our youngest, Allie, to her pediatrician for her 18 month well check.  At home, prior to the appointment, I had noticed a pretty substantial regression in her vocalization and play skills in the past three months.  As I filled out the M-CHAT while waiting to see the doctor, I knew that my yes's and No's on that sheet indicated characteristics of autism.  But in my mind, she had words, so she couldn't possibly have autism.  When the doctor came in and saw my answers on that sheet, she said the big A word and I felt like I was shot through the heart. 

When we were driving home, I sobbed hysterically.  I could not even finish a phone conversation with my husband.  I had to pull over three times during that 30 minute commute to lay my head on the steering wheel of my car and cry.  As I  cried, I would look back at this sweet, innocent little girl sitting in her car seat sleeping.  As much pain as I was feeling, I felt more for her.

Shortly after this appointment, we had a developmental evaluation done.  It showed she had significant delays and they also agreed she showed signs of autism.  Then a speech evaluation followed.  Same results.  With each evaluation, I felt more heartbroken. 

I spent about 3 weeks just numb.  I wouldn't allow myself to feel anything.  I couldn't cry, laugh, be happy or sad.  I went through the motions of every aspect of my daily life.  I just did not have anything else to give.  I did what I had to to get through each day. 

I feel like I am reliving my worst period of my whole adult life.  That occurred in the summer of 2008 when Curly was in the process of being diagnosed.  Every step of Allie's intervention and therapies is a reminder of what that time three years ago was like. 

This summer, Allie will most likely be diagnosed on the spectrum.  As the days get closer to that event, I do not know how I will handle it.  I think in my mind, I know I have the tools to get through it but in my heart, I don't think you ever really get over diagnosis.  I still know the date, the clothes I wore, the moment I read the paperwork saying Abigail had autism, every single detail surrounding that day of diagnosis. 

I am scared of my feelings or taking the time to actually feel.  I am scared about the futures of my little girls.  I am trying my best but do not know sometimes how I have made it through each day.  As a doctor told me, "You are not running a sprint, you are running a marathon".  So the marathon begins times two.  Even if I don't think I am ready for the challenges of having two children on the spectrum, I HAVE  to be. 

Once the summer is over, I will take a little time to feel, to try to heal.  Then I move on.  I do what I have done for the past three years with Abigail.  I take one day at a time, one moment at a time.  I deal with one challenge at a time.  I advocate for their rights.  I ask for support when I need it.  I ask for help.  I help find them find their strengths and not focus on their weaknesses.  I give them a childhood that doesn't completely focus on their disabilities.  And I find time for me. 

Easier said than done but I am a work in progress.

The End of Autism Awareness Month

Another month goes by but this one was especially important to my family.  Those of us who know our family might think it is an important month because my husband and I celebrated our anniversary.  Families who have a child with autism have been shown to have an 80% divorce rate.  We are very proud of our nine years together and work very hard not to be part of that 80 percentile.  But April will always be very important and very special to us...its Autism Awareness Month. 

In years past, I have found the media coverage of Autism Awareness Month to be very minimal.  Of the news stories in the past, I thought it stayed focused on the vaccine debate and showed very little about what autism is.  I thought to myself, "There has to be someone out there that will show to the general public what autism involves."  I wanted so badly for the media to show the faces of autism.  Show the toddlers who lose speech and begin succumbing to their own little worlds.  Show the parents who grieve for the child and their dreams for that child.  Show all the therapies and the therapists who work so hard for very small gains.  Show special ed classrooms full of autistic children and their very brave and dedicated teachers.  Show the school systems who have all these children but no funds to have equipment to better serve them.  Show adults with autism and what life is like for these individuals.  I wanted so badly for everyone to have a better understanding of what those of us with someone with autism in our lives sees on a daily basis.

On April 1st, 2011, I hoped that this month would be different than the Aprils in the past.  It is now the end of the month and I am so pleased that a cause so close to my heart has been made so public this month.  Almost every single day this month, there has been a piece on autism on television and radio.  These have not been fluff pieces.  They have shown life with autism from diagnosis to adulthood.  They have shown the enormous financial need of those with autism.  They have shown therapies and theories as to why autism is so prevalent.  They have shown the emotional struggles of parents trying to make their child's life great.  They have shown the symptoms not only in words but in pictures.  They have shown school settings and the great needs our kids have for getting appropriate education.  They have shown adults with autism and the struggles they have in a world that they do not understand.  They have shown how autism affects the family, not only the parents but also the siblings.  They have shown the cases of severe autism.  They show what happens when your child does not get words, EVER.  They have shown methods of communication that these individuals must use in order to let others know what they need, want, and feel. 

I must say thank you.  Thank you for educating those who do not know about autism.  Thank you for providing a preview to my own future.  Thank you for making me feel like I am not alone. 

My hope is that with all the information out there this month, that someone somewhere has a bit more understanding of these kids and adults with autism.  That I can take my little girl into a store without the stares and rude comments.  That I do not get the looks from strangers like my child is a brat and I am a bad parent.  My hope is that not only my child but all children and adults with autism will one day be welcomed in our community completely. 

This month has given me hope, strength, and a lot of tears.  Autism is not an easy thing to see.  I wish I didn't have to see it too.  Even though some of the things I saw on TV, did make me cry, I am so grateful for the education that this month has provided for me.  I hope others learned one detail about autism that they did not know before.  If you did, you have made this month worthwhile.

Q&A with Curly's Mommy

People who know I have an autistic child often ask me questions about autism and about parenting a child with autism.  I also get ALOT of questions while out in public with my daughter.  I thought I would share my most asked questions and their answers with you all today.

1.  When did I notice that Abigail had autism?

      Abigail was born with delays, I believe.  She never met any developmental milestone on time.  As a newborn, she rarely looked at us, would roll her eyes to avoid looking in our direction, and would scream if she was made to touch things that were upsetting to her.  When she was around 9 months old, she did not look me in the eye, she would choke on pureed foods, she did not attempt to hold a cup or bottle, she did not play with toys, she would line up items in "her" order on the floor and would get very upset if they were moved, and she did not respond to her name.  At fifteen months old, she went silent.  She only had one or two words up to that point and then one day they were gone.  The only noise that came from her mouth were cries.  I can now look back at pictures and see her autism as early as 8 or 9 months old.  It became very evident after her first birthday.  Because of her very evident delays, she was diagnosed with autism at 20 months old.

2.  Do I believe vaccines cause autism?

     No!  Like I said earlier, I believe Abigail was born with autism.  She showed slow development before she ever had a vaccine.  I do believe that our vaccines should be greener and there should be a slower schedule for these vaccines.  I believe there is no need for any child, any age to have four different vaccines in one day.  I believe your pediatricians should offer you a delayed vaccination schedule where your child only gets one to two vaccines at a time.  If your physician refuses this, get a pediatrician who will go along with this request.

3.  Does Early Intervention Work?

     YES!  Abigail started receiving therapy 5 days a week at age 18 months.  She received this therapy until she reached age 3.  Her developmental therapist got her to respond to her name, play with toys appropriately, and sit and  listen to a complete book.  Thank you, Zulmie.   Her occupational therapist got her to pick up a spoon and put it in her mouth...Thank you, Mary!  Her speech therapists got her to sit at a table and look through a book and to make choices...Thank you, LaNae.  At age three, she went to a pre-k classroom for autistic children.  They got her to feed herself, to sit for a group circle activity, to sit on the potty, and to learn how to swing on the swing set.  Early intervention does work.  You can see a difference between the kids that had it and the kids that didn't. 

4.  Will Abigail ever talk?

     I don't know.  I hope everyday that she will.  The statistics show that most kids who will talk have at least one word by age 5.  Kids who will get a good vocabulary of words tend to have multiple words by age 8.  It is rare for a child over 8 to become verbal.  It breaks my heart to think that Abigail may not get words.  But she does communicate.  She uses gestures and pictures to express what she needs or wants.  And I know that even if she never calls out for me, that she loves me.  She tells me this everyday.

5.  Why is Abigail still wearing diapers?

     Abigail will be 5 this November.  She has severe autism.  Most kids with autism do not become potty-trained until they are 6 or 7.  She will sit on a potty and occasionally go to the bathroom but that is as far as we are with potty training.  Kids with autism have a very difficult time with activities of daily living.  Potty training is a hard concept for these kids.  She will get there and we have time. 

6.  Why does Abigail eat pureed foods?

      She has sensory integration disorder.  She does not like the feel of chunky foods, table foods, or cut up soft foods in her mouth.  She started gagging on her foods at 6 months old.  At a year, she was just progressing to stage 3 baby food.  She has been there ever since.  She will not eat finger foods or any table foods.  Over the last six months, she has accepted some soft pastas, cheerios, and pieces of cookies in her mouth.  She does not pick up a food and feed it to herself.  Everything she eats has to come off of a spoon.  She only drinks out of a sippy cup.  She can not suck a straw.  She can drink from an open cup but can be very messy doing so.  Sensory integration disorder also makes her sensitive to smells (like strong perfumes or cigarette smoking smells), windy days, snow, rain, and bright sunlight.  She also does not like to put her hands in play dough or any sticky substance.  When given chunky foods, she will throw up.  When it is too windy out, she will have a meltdown and scream and cry.  We are working on increasing her foods but it is a long journey and we are no where near the end.

7.  How do you deal with raising a child with autism?

    I have to get up and do my job.  My job is to be the best mommy I can be to three amazing little girls.  I fail miserably on most days.  But I keep trying.  There are days that I want to lay in bed and not have to deal with the sensory meltdowns or the sleepless nights or seeing the distance in my child's eyes.  There are days that Abigail is so into her autism that no one can get to her.  There are days that I listen to my child scream all day and all night.  These are the days that I cringe at my life.  These are the days I want to have a little pity party for myself.  These are the days that I wish those who think we have it easy could come in and see just how "easy" this really is. 

But there are great days too.  The days where Abigail smiles and laughs and melts my heart.  The days when she had a great day at school.  The days when she plays along with her sisters.  The days when I can take her out in public and not get the stares and the condescending remarks.  The days when autism is not our focus.  The days when we are just a family of five raising our girls and trying to provide a good life for them.  The days when I don't worry about her future.  The days when I live day to day, moment to moment.  Over Abigail's life, there have been a lot of really great moments and this is what keeps me going.  Raising a special needs child is hard.  There is a lot of stress involved.  Your household has a lot of chaos.  But in the end, you remember the good memories, the days that your face hurt from smiling, the days when you got good eye contact and a hug.  The days when you know the autism did not take away the love between a child and a parent. 

Extracurricular Activities and Autism

We are very blessed indeed to have Abigail in our lives but also very blessed for the people that provide some "normalcy" to our daughter.  When Abigail was first diagnosed, I wondered if her childhood could possibly be "normal".  I wanted so desperately for her to have some typical childhood experiences.  I have been so lucky to have met some wonderful professionals who have given her these wonderful activities and given us a chance to see our daughter have some "normal" childhood experiences.

Abigail has some wonderful teachers.  They are more than willing to take her to school functions, like a band performance or assembly and the twice a year field trips.  The gym teacher at her school has let her class join the kindergarten class for some P.E. time.  I would not be able to thank them enough for allowing this inclusion for Curly.  They have gone above and beyond what is required for them and we are so grateful.  Thank you from the bottom of our hearts, Miss Susan, Miss Amanda, and Miss Byerly.  You all deserve so much more praise than what you all receive.

About a year ago, we received an email about a gymnastics class for kids with special needs and autism.  We thought this would be such a great extracurricular activity for Abigail.  From the first class, Abigail has been in love.  Teacher Brooke and Teacher Monica have been so great with not only Abigail but all the other kids who have been in this class.  I appreciate their patience and their guidance during these classes.  It has meant so much to me that there is a place that Abigail can go and experience what other "typical" kids can experience.  There are very few places that accept a child with very low functioning autism.  I am so grateful that her teachers at gymnastics were so welcoming to us and so understanding. 

We have just started TopSoccer.  It is a class run by our local parks and recreation that is meant for special needs kids.  Abigail is the youngest and probably one of the most severe in the class.  It takes her much longer to learn a skill or to focus on a skill.  I am very grateful for the opportunity for Abigail to join in on this group.  The high school "buddies" that the program uses have been wonderful with Abigail and very patient.  It makes me so happy to see that a child with a lot of special needs can be included in a sport and learn new skills if given the time and the right guidance.

When Abigail was diagnosed, I didn't know what her childhood would look like.  I didn't know if she would be included in activities that all children do.  It makes me so happy to know that Abigail has seen some inclusion in her activities and has enjoyed those experiences.  No one will ever really know how much this means to me as her mother.  I will always be grateful to these people who went above and beyond the norm to help not only our family but all the other families of a special need child.

Autism Awareness Month

April is Autism Awareness Month.  We are in day 8 of the month and I have received autism related materials in the mail everyday.  I am lucky to receive anything about autism once a month normally.  My email has been bombarded by invites to events in our area about autism, clips people have found on TV about autism, and emails pleading with me to give to autism related charities. 

The television stations seem to think that we only need to be educated about autism one month a year.  The occasional segment on daytime TV or the nightly news is enough for the stations to produce. 

There are campaigns to raise awareness like lighting our buildings blue, dressing in blue, or letter writing to our politicians.  Of course, I choose to participate in these campaigns.  But in the back of my mind, I wonder, "Is this doing anything?"  "Will this make any difference at all?"

I tend to think that any awareness is good awareness.  I feel the more people know about this devastating, horrible condition the better.  But I have to admit, the stories on TV, the emails, and the mailed materials can be so depressing when you have a child with autism.

The general public sees these stories or reads up on autism and they maybe think how lucky they are.  How lucky to have "normal" children.  How lucky that they do not have to live everyday with someone with autism.  They hug their children a little tighter or maybe feel a little more compassion for those of us with autistic children. 

We parents, the ones who haven't forgotten about autism since the day our children were diagnosed, are happy to have a month devoted to autism but this month does bring up alot of our bad memories of the past and our fears for our futures. 

Our past memories are full of the pain from seeing our children lose skills while their peers thrive.  Our memories are full of the sadness and despair that we felt at diagnosis.  These memories include the anger at the autism and the hatred towards those who choose not to take the time to understand the condition.  We remember how deeply devastated we were during this time and wonder how we made it through this period of our life. 

Autism awareness reminds us of our fears.  When we see a video clip on autism, we relate to the parents, we see our child with autism in the children in the videos.  It shows us how severe autism can be.  The statistics about autism scare us.  The unknowns about autism scare us even more.  It reminds us that when we look at our child with autism, we don't see the child we thought we would see.  We see our fears for that child.  We see a human being that will always need substantial support from us for the rest of our lives.  Then what?  We wonder what will happen to this child when we are no longer around.  We wonder what her life is going to be like as a child, as a teenager, as an adult? 

I am very proud that there is attention being drawn to my daughter's disability.  I hope the attention leads to progress in the diagnosis and treatment of autism.  Whether I am heartbroken over her diagnosis or content with the knowledge that this is what we are facing (I go back and forth on this many times throughout each day), I will always be an advocate for her and the millions of other children and adults who do not have a voice to be heard. 

For the past two years, I have fought for your health, your therapies, your education.  For the past two years, I have tried to learn as much as I possibly could about your condition.  For the past two years, I have not had one day where I did not think and worry about your condition.  For the past two years, I have been your mommy, your caretaker, your advocate.  For the past two years, you have been my daughter.  We have been through a lot in these two years since diagnosis.  We have both grown so much.  Autism will not take our relationship from us.  Abigail, you are my daughter.  I am your mother...forever.

Count Your Blessings

I am very proud of my 4 1/2 year old daughter who has autism.  She struggles with so many things in life that her sisters and peers do not have to.  She amazes me with her talents and abilities.  She will always have my respect for the health problems she has acquired because of her autism. 

This little girl endures many doctor's appointments, testing for neurological and physical issues, and many blood draws that would make any kid scream.  She handles these appointments (mostly) with a cheerful demeanor.  She screams at times and does not understand why she must endure another needle stick.  I wish I could do these things for her but I can not. 

She has seen developmental pediatricians, regular pediatricians, occupational therapists, speech therapists, feeding therapists, psychologists,  ENT's, neurologists, GI doctors, endocrinologists, and many more throughout her short 4 1/2 years of life.  She see doctors at least every other month.

She holds illnesses longer than the average child.  A cold can last two weeks for her.  She is prone to ear infections.  She has had 3 sets of tube in 4 years.  She gets very ill from spring and fall allergies.  If someone sneezes around her, she will be sick in a few days. 

She does not understand illness.  She can not tell you in any way why she is sick.  She shuts down.  She stops drinking, eating, and focusing.  She melts down.  The pain of the illness is too much for her.  She reverts to wanting to be by herself.  She cries and screams and tries everything she knows to stop feeling so miserable. 

Autism has given her a lower, less active immune system.  Autism has taken away her ability to communicate what is wrong with her and how she feels.  Autism has made her a patient of about every pediatric speciality doctor at UNC hospitals.  Autism has made Mommy and Daddy frequent fliers at the hospital and clinics. 

Still, we know there are much worse situations we could be in.  As you walk through hospitals and clinics, you see kids getting cancer treatments, kids who can walk and may never be able to, kids who can't be kids because of their disabilities.

We are grateful for Abigail.  We are so lucky to have her in our lives.  We wish seeing all these doctors and specialists were not part of her life or ours, but know that they always will play a part in our lives.  We admire Abigail for all she has been through and will continue to go through.  She has more strength and stamina than most adults. 

Take time to think about how lucky you are to have healthy children.  If your child has minor health issues, like colds, allergies, and ear infections, you are lucky.  Take time to give your children an extra hug, to talk to them about their day, just to love them.  Look in your child for their strength.  Don't feel sorry for yourself.  Something we learned a long time ago.  Things can always be worse and a lot of people have it a lot worse than you do. 

This is what I remember everytime I stand next to Abigail getting blood drawn or getting put to sleep to endure yet another procedure.  I will forever count my blessings.  I have three of the best blessings in the world...Abigail, Audrey, and Allie.

Light It Blue

Light It Up Blue is an awareness event sponsored by Autism Speaks.  On April 1st and 2nd, the plan is to simply Light It Blue.  April is Autism Awareness Month and to start the month off, Autism Speaks is asking everyone to participate in Light It Up Blue.  You can do this by 1)  Wearing Blue Clothing, 2)  Wear the Autism Puzzle Piece, or 3) Put blue light bulbs in your outdoor fixtures.  Start conversations with your co-workers, neighbors, and friends as to why you are lighting your world up blue. 

Any awareness one can bring to autism is beneficial to our cause.  One in 110 kids are diagnosed with autism.  Every 17 minutes, a child is diagnosed.  Our children with autism need to be accepted into our world.  The more you can learn about this devastating disorder, the better our world will be. 

Please on April 1 and April 2nd, Light It Up Blue!

*For more information, check out Autism Speaks  http://www.lightitupblue.org/

Autism's Life Lesson

It amazes me that it has been almost 3 years since Abigail was diagnosed.  There have been moments of great sadness and great accomplishment.  I have always said I would never want to relive the months, weeks, and days that led to her diagnosis.  The clinicians who did her diagnosis were incredible.  They were so caring and considerate of us, her parents, during this time.  I could never possibly thank them enough for their help during that time.  I remember hearing, "We think your daughter has autism" from these great people and feeling like I was crumbling.  I thought I had to be so brave.  I held in the tears and the screams and the madness until the professionals left.  Then I melted.  I think I cried more in the weeks that followed Abigail's diagnosis than ever before.  There were times just saying her name or looking at her would send me into a hysterical meltdown.  I had so much blame, so much anger, so much anxiety about her diagnosis. 

I no longer have the blame.  I learned that blaming myself does not help Abigail.  It only hurts her.  The more I blame myself, the more energy I have wasted.  The time I spend blaming myself, is time I could spend with Abigail helping her. 

I still have the anger.  I HATE autism.  I HATE what autism has done to my family.  I HATE what autism has taken away from my beautiful Abigail.  Autism took away all the hopes and dreams I once had for Abigail.  It took away her "normal" childhood.  It took away her speech.  I would give anything to hear her say even just one word.  It took away her milestones.  It took away her relationship with her siblings.  It had such a great hold on my sweet litle girl and still does.  There are days all I can see is my baby girl stuck in a body that is being controlled by her autism.  There are days I am so mad at this disorder that I could just scream.  My sweet Abigail will always have this aweful disorder with her for the rest of her life.  I don't really know if I will ever get over the anger.  You, autism, have taken over our lives, and for that I will always have anger with you.

Anxiety, oh boy, do I ever have that.  I am full of anxiety about everything that surrounds Abigail's condition to how our family is affected by her disorder.  I worry about her future constantly.  I am a planner by nature and want to know what the future holds at all times.  It is beyond difficult for me to not know what Abigail's future holds.  I have been told she will need a lot of help as an adult.  I will be there for her till the day I die.  What concerns me is what happens to her when Jason and I are no longer around.  I wake up in the morning worrying about this and go to bed each night with worry.  I worry that I have made the right decisions every single day for Abigail.  I worry that her IEP benefits her.  I worry about paying for therapies.  I worry about how other children treat her when I am not around.  I worry about Audrey and Allie and how Abigail's autism affects them.  I worry that I am not readily available to my other girls because of Abigail's needs.  I worry how the stress from having a special needs child affects my relationship with my husband.  I worry about the unknown.  Will Abigail ever get speech?  Will Abigail ever get potty trained?  Will she ever have some self help skills and learn to do things on her own?  Will she ever eat table foods?  Will she make friends?  Will she be happy?  Is she happy now? 

The anxiety and sometimes the depression that goes with having a special needs child can be crippling.  I think I have come a long way in the past three years.  I know Abigail has.  I will forever be indebted to the professionals that have worked with Abigail and do so today.  Somehow, they have and do make my days a little nicer and I appreciate them more than ever.

Three years ago, I was in a very dark place full of hatred, fear, and despair.  Once I got out of that place, I swore I could never go through that again.  I still feel that way.  It would not be beneficial to me or helpful to my children to go back to that place.  I just hope with each day that I have enough strength to get me through this day.  Day by day, moment by moment.  Autism, this is what you have taught me.

Blessings

I am a very proud mother of three.  Three little girls that I try to do everything for.  I try to make all their wishes come true.  Of course, I fail at this from time to time.  But I do feel like I am giving them a lot of extras that my own parents couldn't afford to give me or weren't readily available for them.  Sometimes I feel amazed that they have what they have.  There are so many others who do not have the gifts that they have.  My kids have a warm, loving roof over their head.  They always have food to eat.  They are kept clean and have clothes on their bodies.  They are being given some of the best medical care that one could hope for.  They have tons of toys and books.  Most importantly, they have two parents who adore them and would provide all that we could for any one of them.

We feel lucky to be able to give them this life.  We are very blessed.  I can not believe how lucky my own life is.  I get to spend my days with a husband that loves me even when I look like I just rolled out of bed and even when I am so stressed that the wrong word would send me into a craze.

  I have a gorgeous Abigail Rose that has gave me meaning and a purpose in
my life.  She has taught me to take time to smell the roses and appreciate life today instead of always looking forward and missing what is so great about today.  I am so very proud of her for everything she does in her life....as life is a little bit more difficult for my Abigail Rose. 

Audrey Marie is the light at the end of the tunnel when you think your life is in complete darkness.  I will forever be grateful to her for making me move on from Abigail's diagnosis.  She makes me laugh when there isn't much to laugh about.  She is so smart and makes me feel like what I am doing at home with her matters.  I admire her compassion towards Abigail and her ability to know when I need a kiss and a hug to make my day a little sweeter.

Georgia Alexandra (Allie)  is a gift that we did not plan or expect.  Her hugs are what moms live for.  Her laugh is infectious.   She is smart beyond her age.  She lights up my day everytime I see her.  I love to hold her and kiss her head and just enjoy her as a baby.  My life was complete with her birth.

Some days you really get caught up in the negativity that surrounds raising a special needs child.  My babies are growing up fast.   They need me less and less.  My life is a million times better than I ever thought it would be.  I do not know what the future holds but the love of my family is what sustains me.  It keeps me focused and happy.  I can not imagine my life without any one of them. 

Remember to think about your blessings.  Remember the important things in life.  Remember that so many others have it so much worse than you.  These are the things I think of when I am having a bad day.  My girls are my greatest blessings and everything else is just icing on the cake.

An Afternoon With Temple Grandin

Two and half years ago, I was in a very dark, sad place.  Abigail had just been diagnosed with autism.  I felt such anger, blame, and guilt towards myself.  I wondered what I had done to make her this way. 
"When was the day that I caused her to have this?"  I wondered how I was going to be able to accept the diagnosis, stop blaming myself, and start helping her learn to live with her disability.  When I did not think I could do this, this whole thing of being able to raise a child with autism, Marilena walked into my life.  Marilena was Abigail's speech therapist.  One day, when I was really struggling to accept the autism, she gave me a hug and asked me what she could do to help.  I broke down this wall I had been covering myself in.  In public, prior to this moment, I did not show emotion.  I pretended everything was fine, even though my life felt like it had crumbled before my eyes.  I told Marilena on that day that I knew Abigail had autism but I did not know how I would be able to handle all that goes with the diagnosis.  "Would she ever talk?"  "Would she grow up to be a functioning adult?"  "Would I be able to control her as she got older?"  "How would I get through to her to make a better life for her?"  Marilena suggested I read books by Temple Grandin. 

Temple Grandin is an author of many books on autism and animal welfare.  She lectures to groups across the country on these topics.  She went to college and has a PhD.  She also has autism. 

Temple Grandin's books have changed my life.  Her books have given me hope when I felt like there was none.  Her books have given me insight into Abigail's world when I thought I could not get into her world. 
Her books have made me a better parent and advocate for Abigail. 

A few days ago, I was able to see Dr. Grandin speak.  It has been a dream of mine to do so since I read the first page of the first book of Temple Grandins.  I was in awe of seeing her in real life.  I admire this woman so much and she could never possibly know how much of an impact she has had on my life. 

Thank you Marilena for the recommendation and that hug that opened my world so many years ago.  Thank you Temple Grandin for everything you do and the things you do that you are not even aware of.  My life is so much better because of these two extraordinary women.

www.templegrandin.com

A little Autism In All of Us

The other day I was thinking about Abigail's "issues".  She has a lot of sensory issues.  She does not like the feel of a toothbrush in her mouth.  She does not like her head massaged while getting her hair washed.  She hates to wear turtlenecks.  She only likes cotton material in her clothes.  She does not enjoy playing in sand or playdough or playing with food. 

Then I thought about myself and others I know that have sensory issues too.  My middle child does not like to wear socks.  She hates the feel of socks on her feet.  I don't wear turtlenecks and only wear the softest feeling clothes.  I don't like the way eggs feel as they go down your throat.  I don't really enjoy the feel of dirt on my hands.  Others do not like the bright sunlight or windy days.  Some do not like smells in lotions or perfumes. 

I learned to sit in the W position, so did my curly.  This is a characteristic of kids with autism.  I know many people and small children who sit this way.  My curly does not like crowded malls or people who get right in her face.  I must agree with Curly's feelings on that one.  I understand a lot of Curly's aversions to daily life.

I think everyone has sensory issues and may even have a little bit of autism deep down inside.  The only difference is that we "typical" people can handle these aversions and it does not affect our daily life.  Curly and Curly's people can not deal with the senses.  They have to be taught how to let these aversions not affect their daily lives.  This is a very hard thing for these kids to do. 

Take a little time to think about your "issues".  You'd be amazed how many sensory issues you have that you don't think about.

Like a G6

There was a day when Laurie Berkner, The Fresh Beat Band, and the Dora themesong were all Abigail needed.  In the last two months, her musical likes have changed so much.  Don't worry, Laurie Berkner, you still have a place in Abigail's heart but she also likes this crazy song, "Like A G6".  Abigail is 4 and 1/2 and gets excited every time this song comes on the radio.  The other day, we were driving back home from school when this song came on.  I looked back to see my baby jamming out in the backseat.  She was bopping her head to the beat and making her little noises to the rythym  of the song.  She was rocking back and forth so much that a cop started to follow us home and even went around us on her side of the car, I assume to make sure she was buckled in.  The smile was amazing on that cop's face and on our little girls.  At first, I thought how could she like this song.  A song about drinking and living it up, riding on private jets and so forth.  But all it took was that smile on her face and the genuine happiness I saw in her eyes to turn me around. 

I thought to myself, "Who cares what the song is about".  If it makes Abigail smile and makes her happy, then that's all that matters.  I find this statement very true with life with curly.  Of course, we have rules and things she is not allowed to do but when Curly is happy, everyone else in the house is happy.

P.S.  I have posted a video of the song in hopes it makes you as happy as it makes our Curly.

Like A G6

Three Sisters

My daughter has two beautiful, smart sisters.  They are young and wiser than I ever imagined.  Audrey is now 2 1/2 years old and picks up on everything.  Allie is 16 months old and is my loving child.  Thankfully, they are both "typically developing" which is a fancy term for normal.  But who decides what is normal, anyway?  I used to think they were both too young to understand why Abigail acted the way she does and most certainly too young to know what autism is.  Boy was I wrong.

Last summer, when Audrey was just two, she stunned me.  She would take a bath with Abigail and try to wash Abigail's face.  She would try to wash Abigail's hair.  She would grab diapers for Abigail when she was wet or dirty.  She would try to feed Abigail at the table.  One day, I asked Audrey, "Why are you helping Abigail?"  She said, " I help Bail (what she calls Abigail).  "Bail can't."  She then looked at Abigail with such love and empathy.

Audrey made me so proud that day for loving her sister and recognizing that she needs extra help.  She also broke my heart that day.  I do not want Audrey or Allie to feel like they have to protect Abigail or do things for her.  I want them to have a normal childhood.  But can they really when their older sister has autism?

It is my hope that Audrey and Allie love their sister unconditionally and understand that deep inside that little girl's mind and body, she loves them too.  If they grow up with this love for Abigail and a respect for Abigail, I have done my job.

What is Autism?

Two and a half years ago, my life changed forever. I had a 20 month old little girl named Abigail. In an hour visit from a psychologist, my dreams for her changed forever. She had autism. I had dreamt of playing dolls with her, having tea parties, seeing her grow up to go to a prom, and go away to college. I wondered what she would be like as an adult when she no longer needed us and became her own person.

On this day, the dreaded diagnosis day, I felt like all my hopes and dreams for her were shattered. My idea of "normal" was changed. Our life would forever be changed. The unknowns about her future would start to eat away at me. I had to spend the next few months dealing with the guilt I felt for her having autism. I spent the first few months blaming myself.
" What did I do to make her this way?" One day I realized, I had to change, I had to quit blaming myself, I had to move on in order to help her succeed and to keep my own sanity.

Two and half years later, I feel like autism is this big cloud over my head that sucks me up at times and devours my hope and happiness. Don't get me wrong. There are really great moments like when my then 2 year old finally drank from her sippy cup on her own or when our then 3 year old daughter used a spoon to feed herself some yogurt. But there are really bad moments too. Moments that you see your child stuck in herself trying desperatly to break free from her autism. Moments when you see rage in her eyes because she has no words or ability to express how distressed she is at that moment. Our house is full of moments of normalcy when nothing seems to be different between our home and any other house with children. We also have moments when all you have to do is look our oldest in the eye and you know we are completly different than the average american family.

Autism is beyond difficult. Every second of our day revolves around that diagnosis. Our now 4 year old Abigail is nonverbal with severe autism. She is yet to be potty-trained. She spends many a night up all night bouncing. She relies on us for almost everything. She can not totally feed herself, she can not wash herself, or tell us when she is sick or hurt. Even with all the things that autism has taken away from Abigail, my husband and I, and her sisters, life with curly (as we call her) is outstanding. There are constant struggles but I can not imagine my life without her in it.

Thank you, Curly, for letting me be your mother, for making me a better mother to you and your sisters. Thank you for letting me be your voice, your advocate, and your companion. My life was forever changed by you but life is so much sweeter because of you.