5 Year Anniversary

Today, it has been five years.

•   Five years of survival.  Five years of hoping for communication.  Five years of trying everything we know.  Five years of meltdowns from her and us. 

• Five years has felt like one hundred at times and also flown by. 

•  Five years of harassing doctors and insurance companies and state and federal organizations that are all supposed to help this girl but very rarely do.

• Five years of messes on the floor, walls, and anything else she can get her hands on.

• Five years of trying to understand her world and get inside of it.

• Five years of therapies and meetings to tell us about what she can not do.

• Five years of doctor's appointments that blame all and everything on her disability.

The day was August 26, 2008.  Abigail was diagnosed with autism.  It was the most gut-wrenching, life-changing day of my life.  Life was good and happy and pretty calm up until that day.  Every day that has followed has been complete chaos and emotionally draining. 

There were moments and still are at times, that we wondered if we could make it through the day.  There was meetings so draining with news so devastating that we could not contain our emotions.
There was a little girl who at age 20 months was given a label that she would carry for the rest of her life.

It was on this day that I become more caregiver and less mom.  I became, in public, the fighter, the advocator, her protector.  In private, I was crumbling and broken.

There have been good moments that have kept me going.  But these are few and far between.

Like the first time she would hold my hand or give me a hug.  The first time she looked at me when I said her name.  The first time she used her spoon to feed herself.  The first time she drank from her sippy cup by herself.  The first time I saw her swim. 

Or the times that she smiles at her sisters or gives us her amazing, heart-fulfilling laugh.  Or when she is just happy.  These are the moments we cherish and give us the energy to keep us going when things are not so good.

There have been so many people who have helped us along the way.  From the psychologist who diagnosed her who was so patient and kind to us at such a devastating time.  To the therapists who were like members of our family in those early days.  We had an amazing preschool group who worked with her and became so special to me.  I could not have made it through that period of time without you all.  You not only helped me with Abigail but also gave me something to smile about, when at home, there were no smiles. 

To the school teachers who have gone above and beyond to help Abigail.  I don't know how you all get to her in a way that we still struggle to.  I am so grateful for your time and efforts. 

To Beacon School and Athens, thank you for accepting my girls, all with their special issues, and our family to your community.  I feel so blessed that Abigail has so many wonderful, caring individuals looking after her and making her feel that she is a part of this great community.  Abigail is happier than we have ever seen her and it is a testament to the wonderful things you have given her.

As we move forward into year six, I am more realistic than ever about Abigail's future.  I see what was a 20 month Abigail turning into an almost seven year old.  I have learned more than I ever wanted to know about autism in these last five years.  I have felt depleted and encouraged all at the same time.  Life with Abigail is for sure never dull but I could not imagine life without her and am grateful for the lessons she has taught me in these last five years.






 

Beacon School

What is it that makes Beacon special?  The staff genuinely love the students.  They care about their academics but also what makes each kid tick.  They get to know the families and care about what the families lives are like away from Beacon.  Teachers, staff, educational assistants, therapists, administration know each kid by face and name.  They greet you at the front door in the morning with smiles and hugs.  When we arrive with Abigail, she is treated like a rock star.

Beacon is a place where these special kids can grow at their own speed and have the support they need to do so.  It is a clean, bright, loving home away from home. 

I have had the experience of a lifetime in just the six months that my girls have attended.  Not only have I got to see my kids thrive in their classrooms but I have also had the opportunity to attend some remarkable events.  In April, I attended Special Olympics.  The whole school goes to this.  From therapists to teachers to administrators.  I saw kids who spent a good percentage of their time in wheelchairs, getting out of them and with the help of some incredible aides, participating in sprint races.  I saw the joy in their eyes when they accomplished something they had been working on for months.  I saw a little girl in Abigail's class win her relay and beam with pride as she stood getting her medal.  I saw families in the stands crying and cheering for their kids.  I saw teachers crying as their kids succeeded.  It was an incredible event and one I would recommend attending if you ever had the chance. 

In May, I attended the Preschool graduation ceremony at Beacon.  It was packed with family and friends who were there to show their support to these amazing children.  I was filled with pride as I saw Allie up on stage participating in a couple of songs and standing up to get her awards.  They gave each of these kids in preschool awards and told the audience in what way they had improved in this school year.  For Allie, she is now using sentences to make her wants and needs known and she is actively playing with her classmates and developing some really great social skills.  For that hour of the graduation and awards, this special needs mom forgot that my kid had special needs or attended a special needs school.  I think all of us parents in the audience just were so proud of our kids  for being kids and not special needs kids.  It felt like you were at any school ceremony and you could enjoy the moment and not worry about when the next meltdown would occur.

The day after Allie's ceremony, I attended Abigail's award ceremony and Beacon's graduation.  They had three graduates.  There were very few people in the audience that did not shed tears.  They played videos of each graduate throughout their life.  One graduate had been at Beacon since preschool and some of the teachers had had him in preschool/kindergarten back then.  It was probably the most touching, emotional ceremony I have ever attended.  They were all so proud of themselves and what they had accomplished.  Again, the teachers told the crowd how each kid improved over the school year. For Abigail, she was now able to sit for longer periods of time for instruction and she participated well with her classmates and school lessons.  It was really an emotional time to see her standing up there.  It was something I never thought she would be able to do and she was so happy up there.  Again, you kind of forget that this is a special needs child, she was just a child getting awards for working hard.  After the awards, the teachers had all the families into their classrooms for lunch.  It was an incredible, emotional, gratifying day that really makes all the bad days seem not so bad.

Allie has become more verbal since attending Beacon.  She is pretend plays, which by the way is huge for an autistic child.  She will take turns and follow directions.  She tells us what she wants and needs and even made a little boyfriend this year.  He is a little boy with Down's Syndrome who she calls "cute boy". 

Abigail is happy again.  She is making noises and smiling a lot.  She is having less meltdowns and is a lot calmer.  She will sit and look at books again and attend to activities.  She listens (sometimes) to our requests for her and she is sleeping through the night. 

Who knew that in this small, mountain town in Southeastern Ohio would hold a treasure.  And that treasure is Beacon.  We are forever grateful and appreciative for all that you have given our children and in turn our family.

Updates

It has been forever since I have had energy, ambition, or time to write down my thoughts.  I always feel that it is cathartic when I do have a few minutes in the day to do so.  It has been a crazy almost a  year has passed.  So much has happened to our special children but also us as a family.  I thought it was way past due for an update.

ABIGAIL:

Since my last blog post, Abigail has grown up so much.  She is and will always be my firstborn, my starter child.  She entered an autism classroom in North Carolina in August 2012 to start kindergarten.  In December 2012, she moved with all of us to snowy Ohio, where she attends a school for special needs kids.  She gets to go swimming, has an adaptive p.e. class, music therapy, and yoga at this school.  They also have an amazing sensory room that Abigail is very in love with.  She has a one on one assistant who guides her through her day.  In February 2013, she lost her first tooth.  She is currently six years old, non-verbal but learning how to communicate with an ipad, and probably the happiest I have seen her since she was a baby...a time I like to call B.A. (before autism)

AUDREY:

Audrey is almost 5 years old and is in a prekindergarten classroom with some typical and some special needs children.  Last year, we learned that her gross motor delays and medical history meant that she has mild cerebral palsy.  She has significant weakness in her arms and legs.  With therapy, she should be fine but will require therapy as she grows into an adult.  She is extremely verbal and still likes to pretend she is her sister's keepers. We call her the "Mouth of the South" and "Bossman".  These are probably the best words to describe our tiny middle child known as Audrey.

ALLIE:  Almost two years ago, we relived Abigail's diagnosis day with our baby, Allie.  She has autism and in the 16 months or so since that rainy September day in 2011, she has just blown us away.  At the time of her diagnosis, she had no functional language and wouldn't even look us in the eye.  With lots of therapy and great teachers along the way, Allie now uses functional language, is a love bug, and speaks some in sentences.  She engages with us to join her play, gets annoyed by her loud older sister, and has mad skills on an ipad.

JASON AND HEATHER:  We moved to Ohio at the end of 2012.  Jason is a professor at Ohio University and Heather is at home managing the kids.  We are slowly getting used to the cold, snowy days here in Ohio but longing for spring.  In the past year, I have been able to speak to future special educators at UNC and also had our family featured in an article shining light on CAP services in North Carolina.  Jason has been molding future public administrators both in North Carolina and Ohio.

I read one of the best things recently.  I had posted an article about how the time change is hard on those with autism.  An old friend, commented saying, "I learn something new about autism every time I read your posts". There is no better compliment to me. It is important to me that I can use my life experiences with autism to further educate and raise awareness to those around me.  I hope this blog is informative but also shows that autism did not stop our lives, it only expanded it and made it so much more enriching. 













                                                                                                                                                                                                                                         

Transitions

One day, many years ago, I was having a conversation with a woman who had an adult son with autism. Abigail was newly diagnosed and I was still trying to process this diagnosis. The woman had told me that major life transitions are hard for those with autism but also for their parents. She went on to say that when these kids go into kindergarten, middle school, high school, when other kids are having sleepovers and excelling at EOG tests, our kids are not. When their peers are going to prom, applying to colleges, and getting their driver's licenses, our kids are not. She said all of these transitions will remind us as parents that our kids are not going to be doing these things the way their typical peers are. It reminds us as parents how delayed our children's development really is and brings us back to the way we felt when our child was initially diagnosed. Our family is getting ready for major transitions. Abigail will be starting kindergarten in the fall. She will be leaving the familiar faces and routines of prekindergarten behind and starting anew in her autistic, self-contained kindergarten classroom. Not exactly what I had imagined for her when she was a baby. I think I imagined the day she starts kindergarten as her being excited to see her new school, where she would make lifelong friends and excel at academics. She would stand outside the school in her pretty new dress with her big girl bookbag on her back and I would take a thousand pictures of the day that she really became her own person. The reality of this day in August will be my husband and I holding her hands tight and not letting go, in fear that she will run away from us and not come back. We will walk her to her new classroom with new teachers. The children will all have autism, most nonverbal. Very few will be potty trained and friendships between these kids do not happen overnight. Friendships, if they happen, will take years. She will not come home from school with tons of stories about her days or telling us all about the friends she has made. We will continue to work on skills that most typical kids have mastered by their first birthday. She will make slow progress but for us that will be like a typical child making the honor roll. It is sad that we will not have the typical moments with Abigail that all other parents have. I would be lying if I said it didn't hurt or that I am not just a little jealous of those who have these moments. It will be hard in August but we will move on because being a parent of a child with severe autism does not give you the time to spend wishing things were different when they will always be different and you can't change that. Next week is the last week of pre-k. Friday afternoon, our life will be different. We will have a kindergardner on our hands. Maybe not the one we thought we would have but a girl who is more than ready for her own special kindergarten class come August.

Autism Awareness Month

April is Autism Awareness Month. April 2nd is National Autism Awareness Day. Every day of the year is Autism Awareness Day in my household. I am the quite frazzled, sleep-deprived mom of two daughters with autism. Every year as April approaches, I have this weird feeling take over my body. It is a feeling of sadness for the two girls who have autism in my family and for the countless other families who find themselves in the same situation I am in. I also feel hope and faith that this April will bring us more information on autism and make those who may not be that aware of the condition, more aware. I started April off with anxiety as I knew that the CDC would be soon releasing the new autism prevalance statistics. I knew deep down that the statistics would show that more and more kids are being diagnosed while still hoping this would not be so. The day the statistics were announced, I felt my heart sink. One in 88 kids are now diagnosed with autism. The year Abigail was born, the rates were one in 188. What has happened? Why is this not looked upon as an epidemic? Why are teachers and specialists being downsized at our schools and early intervention cut when the rates only continue to go up? I am not in a position to understand any of the above questions. I am just a simple mom of two wonderful, talented daughters who will need substantial help both in school and at home throughout their lives. I am a parent that wants the schools and administration to understand that a diagnosis of autism does not mean that you give up on the child. I am a woman whose heart bleeds for those who deal with this every day of their lives. Almost four years ago, my life took a differnt turn when my oldest was diagnosed with autism. I am not the carefree, trusting person I once was. I am a person who struggles every day seeing the struggles my children go through every day. I am a person who wants the best for my children, wants them to succeed but knows their successes seem minor compared to other parents typical children. I am a proud mom of these two girls. If given the choice all those years ago, I would not have wanted to have autistic children. Does anyone really? But these girls have changed my life, gave me a voice, and forever made me a much better person. Autism awareness month is almost over but I continue the fight all year long. I am saddened that this year there seems to be less and less media coverage of this condition and more and more families affected. I continue to hope that time will grant us more answers and awareness of autism. I made a pledge to myself many years ago that my life will be about fighting for better services and making the public more aware of my daughter's condition. I continue this pledge every day of my life and take on as many opportunities as I can to make the lives of all kids with autism substantially better. Join the fight for autism. Learn the facts. Get involved.

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.