Thursday, March 28, 2013

Our Journey into the World of Autism

These last several months, my family has been on a journey into a land that we never thought we’d travel to.  It’s a place where you feel alone, but yet so connected to others along the same path of discovery.  Where is this far off land, you ask?  Nowhere you’d guess…not Europe, not the Himalayas, not some tropical island (but a lounge by the beach drinking a margarita sounds nice).  We’ve been thrust into a world of worry, speculation, denial, concern…but mostly, a world that is full of HOPE.  Hope for our 2 year old son who has been diagnosed with Autism.  Well, more specifically, diagnosed as “being on the spectrum,” or “having an autism spectrum disorder.”   I guess it makes me feel better right now to say it that way, rather than actually speaking the word…autistic.  But the truth is, he is very young, and only time will tell us his exact outcome. 

I’ve shared this news with just very close family and friends, but lately I have been feeling a pull on my heart to share Connor’s story, if not just to raise awareness but also to help others who might be in the same situation we have been in since last summer.  April is National Autism Awareness month, and I feel like this is my time to join the fight.  Play my hand.  Jump off the ledge.  Get my feet wet.  And start spreading the word about this developmental disorder that affects as many as 1 in 50 American children.

It seems like at least once a week, I see an article in a magazine or a story on the news about autism, or a friend or family member is calling to tell me about a story they saw in the media.  It’s everywhere.  And with April being Autism Awareness Month, it’s the perfect chance for me to share what I’ve learned about it.  Spreading the word about it is so important—the more people know, the more they will accept the facts…and now I’m part of it.  I want everyone to know how special these kids really are.

I’m no expert on the subject, by any means.  I don’t know all the current research, I haven’t read many books, or joined many online groups.  But what I know stems from living with my son, my baby, who is teaching me more about life and what is important than I have ever known before.   So when I can, I will reference reliable online sources to supplement my story. 

It’s hard to believe that this journey began only 8 months ago.  It feels like my whole life has been consumed by this situation, but yet it’s only been a tiny blip.  And hopefully a few years from now that’s what we’ll be able to do—look back on this as a blip on the radar, that time when we fought and fought to do everything we could for our son, so that he can have a wonderful life. 

The path that led us here started with an evaluation from Early Childhood Intervention, or ECI.   It was decided that Connor, at 17 months, was really only at about a 7 month level in his communication abilities.  This would be my first experience with the terms Receptive and Expressive communication.  Receptive means the child can understand what you are saying to them.  Expressive means that they can talk to you, whether with words or gestures.  I took this so much for granted with my daughter, who is my poster child for typical development.  So we were told to get his hearing checked, and start interventional services to “catch him up.”  In a nutshell, Connor basically didn’t speak nor did he let his needs or wants known.  He did not imitate.  He did not gesture.  He barely babbled.  He wouldn’t look at anyone for more than a second at a time.  He didn’t show me toys.  He didn’t point.  After getting his hearing checked, we learned he had quite a bit of latent fluid in both ears resulting from a prior ear infection.  Tubes were inserted into his ears, the fluid was drained, and his hearing was restored.  While we are confident that the hearing improvement helped Connor’s ability to understand simple commands, it did not do all the other wonderful things for him that were expected in regards to his development.  Kids with hearing loss can still tell you what they need or want, in their own way. 

Interventional services started with ECI, but after assessing him at his 18 month check-up using the CHAT test, my pediatrician recommended taking Connor to a developmental pediatrician.  I remember taking this same 9 question assessment with Isabelle when she was his age, quickly checking off yes to all 9.  When I filled it out for Connor, he only had 2 yes answers (likes being swung around and likes to climb up stairs).  Everything else was no.  I stared at it, wondering what this all meant.   Here is the link to the CHAT test, which is what sparked my doctor’s concern. 

We visited with a developmental pediatrician in late September, and after spending an hour with us, the doctor told us to come back for a formal evaluation (ADOS).  We left feeling ready for the full evaluation, but both of us were still saying to ourselves that this isn’t, wasn’t, couldn’t be the outcome.  At this point, I did some research on toddlers with autism, and one thing I want everyone out there to know is with all the current advances in autism research, it is now possible to place a child on the spectrum well below the age of 2, even as young as 18 months.   The sooner they are diagnosed, the sooner treatment can begin.  And guess what—GOOD NEWS ALERT!!!—kids that have earlier intervention are shown to not only lessen their symptoms, but some even lose the diagnosis all together (there was even a blip about this in Parents magazine this month). 

Here is a short list of red flags that have been shown to be signs of autism in young children:

6-12 Month Markers
Rare eye contact
Not babbling by 12 months
Not responding to name
Does not reciprocate (wave to someone who waves, smile at someone who smiles, etc)
Apparent preference for objects over people

By 12 Months
Poor or no eye contact
Not responding to name (appears deaf)
Not imitating
Not gesturing by 12 months

By 16 Months
Not speaking single words by 16 months
Not sharing (pointing to) things of interest

By 24 Months
Not spontaneously forming two-word phrases (does not include echolalia, which is repeating another person's word exactly without understanding them)
Regression or loss of any language or social skills at any age

Around this same time we had started Connor in the same mother’s day out program that Isabelle attends.  It did not go well.  This was also a concern for us, because we had him evaluated by his ECI therapist at school, and she told us he was basically lost in that environment.  He cried non-stop, would not participate, wandered the room, and had nothing to do with the teachers or other kids.  Knowing what we know now, this also points very directly to his eventual diagnosis.

October 5, 2012:  D Day (or as we like to call it, Diagnosis Day).  Day that you will never forget, day on which you will never be the same.  Because Connor is so young, the evaluator was mostly just playing with him, and asking me questions.  I could tell where it was going, but still held hope in my heart for her to say something like, “Who in the world thinks this kid has autism?  He’s so normal!”  Yeah, that did not happen.  It was over, and she began calculating his score.  “Based on my results, Connor does show to be on the autism spectrum, mild to moderately.”  Ringing in my ears, pounding in my chest, tears welling up in my eyes.  The doctor came in to review the test with me, but I was overwhelmed.  You can imagine the laundry list of questions that burst into your mind when you are told this about your child.  What does this mean?  Where do we go for help?  Who can lead me in the right direction for therapy?  When will you know for sure what’s going to happen to him?  WHY? WHY? WHY???!!!!!!

Now, at this point Connor was getting 30 minutes a week of play therapy (trying to improve eye contact, get more interactive play out of him, use words or gestures to communicate).   His prescription for autism treatment:  8 hours a week of ABA therapy.  I’m sorry, WHAT DID YOU JUST SAY?  8 hours?  What happened to my 30 minutes a week of intervention?  I was handed a few pamphlets for treatment options in the area, and went on my way.  Here marked the beginning of a very stressful few weeks of deciding what to do. 

Making the calls to our parents was difficult.  There were many tears on my end, but our parents were strong for us.  “It is what it is and you will do everything you can to help him,” said my mom and dad.  My mother-in-law thought I was calling to tell her my dog had died because I was crying so hard!  But when I got the words out, she calmed me down and said, “Ok, what do we have to do to get him better?  Let’s do it.”  The support of those who raised us has been remarkable.  I can’t tell you how many autism parents I have met who tell me their families are all in complete denial and do nothing to help.  We would be lost without the support of our families.

I spent several hours that day researching, and quickly found out that our health insurance does not cover ABA therapy (nor do many of the insurance companies in the US).  But with an autism diagnosis, we could get private speech or occupational therapy.  Oh wait, you only get one 30 minute visit a week covered.  Scratch that.  Call a couple ABA therapy centers.  $80 an hour at one place?  No thank you.  $100 an hour at another?  We’ll pass.  You do the math on it.  When you read that autism treatments can bankrupt people, you should believe it.  It would have been possible to continue using ECI for interventional services (including ABA) and do it for practically free, but our experience with doing in-home therapy was not very helpful for Connor, so we decided to keep forging on and find somewhere that Connor could physically go to every day for help.  Also, knowing about Connor’s difficulty in mother’s day out made us want to send him somewhere for “school” to get him out of his comfort zone, rather than keep him in his little bubble at home. 

The doctor said, “If your insurance won’t cover ABA, call the Brent Woodall Foundation in Irving.  They offer ABA at an affordable price."  This one statement from him would change our course and lead us down a path full of hope and caring.  I called BWF, and yet another evaluation was in the works, this time to decide how often Connor needed to attend therapy.  I had convinced myself he would only need one or two days a week of therapy (it’s amazing how great we are at feeding ourselves what we want to hear), and when the report came back that they wanted him to be in therapy 5 days a week (10 hours total), I was devastated.  Here was yet another person who I thought for sure would tell me that this is all a mistake and to get back to a normal life.  That didn’t happen.  I was just waiting and waiting for some professional to disagree with all of this, but that day never came.   We also saw a pediatric neurologist who ran a genetic blood test to check for abnormalities, which came back totally normal.   Sometimes genetic disorders can be a cause of autism.  This is not the case for Connor, praise God.  He also reviewed the Developmental Pediatrician’s diagnosis report and said he respected this physician and agreed with his findings. 

We made a plan with the Brent Woodall Foundation and signed Connor up.  There are many different therapies for the treatment of autism, but ABA offers scientifically proven results for the improvement of symptoms.  It’s fascinating to watch, and I encourage you to head to the following You Tube Channel to watch videos of a little boy about Connor’s age engaging in this type of therapy.  

So, on November 2nd, 2012, therapy began.  He would be going from 10 am to noon, Monday through Friday, for autism therapy in Irving, TX, 30 miles from home to the Brent Woodall Foundation.  The story of this foundation is remarkable.  Here is a letter taken from their website from the creator and director, Tracy.  She is an ABA therapist who was living in New York City when her husband Brent Woodall was taken from her in the events of 911. 

I am pleased to introduce to you, the Brent Woodall Foundation for Exceptional Children, a 501(c)(3) not-for-profit charitable organization. I created the foundation in memory of my husband, Brent Woodall, who was lost in the events of September 11, 2001. I have coordinated and directed home and school programs for children with autism and developmental disabilities since 1993. Throughout my career, I always found it difficult to watch families struggle through feelings of bewilderment and grief after learning their children’s diagnoses. This struggle often left families in a state of impotence in their fight against their children’s disabilities. Since I began my career in psychology, I have wanted to design a program to educate and empower parents so they may battle their children’s disabilities without added financial burdens. After Brent’s death, I decided that I not only wanted to continue my work helping children with autism and developmental disabilities realize their full potential, but I also wanted to honor Brent, who was always so supportive of my work and encouraged me to start a foundation to realize my own goals. In 2003, I created a non-profit organization, the Brent Woodall Foundation for Exceptional Children, in his memory. The mission of the Brent Woodall Foundation is to empower parents of children with autism and developmental disabilities and to encourage their involvement in their children’s therapy by providing educational training, customized academic and behavioral plans, psychological assessments, and modest financial support. Our dedication to this effort, Brent’s support of me, and our commitment to the children will be carried on through this charity.
Warmest regards,
Tracy Pierce Bender
Executive Director and Founder

What this organization does for families dealing with autism and other developmental disabilities is simply extraordinary.  They offer ABA therapy and a host of other services for families dealing with autism for a very affordable rate.    But, they are a non-profit organization that relies on donations to keep going. 

Connor is also going to private speech therapy once a week.  He was evaluated recently for his communication abilities, and they placed him in the bottom 1% of all two year olds.  It’s scary for us as parents, but we celebrate his progress with such joy!!!

In a few months’ time we’ve really seen some positive changes in Connor.  He is able to point at lots of different pictures in books.  He calls me Mama and Brendan Dada (this just started in March!).  He will look at us for a moment when he wants something.  He knows how to request certain foods or toys he wants.  He uses a few words functionally, and can repeat lots of words when prompted.  He can tell us whether he wants Mama or Dada to read him a book by grabbing one of us.  These are such simple things, but great accomplishments for Connor.  What these accomplishments show is that he is transferring the information he is learning in therapy to his life at home.  And that means it’s working.

But what challenges are we facing?  Most certainly the biggest challenge is the unknown ahead of us.  It is very possible that with all of this therapy he will at best be off the spectrum within a few years.  That is our constant prayer to God, Jesus, our Blessed Mother, all the saints and all of our loved ones in heaven!  So in the meantime, we keep going.  We keep going because we want our son to play with other kids on the playground and not stay off to the side.  We keep going because one day we hope he will actually want to interact with his big sister and us.  We keep going because we know one day he will speak a full sentence to us.  And we keep going because we love him.  So much.

In April, I am going to be implementing a plan to start raising money for The Brent Woodall Foundation.  No, I am not raising money for Connor’s therapy costs.  I am going to be raising money for the Foundation, to help with the cost of running such an amazing place.   It is SO important that this organization be recognized for the wonderful things it does, and I can’t wait to be a part of that.  I have joined Stella & Dot as a stylist—they support Autism Awareness—and through my trunk shows and online sales I can donate my proceeds to Connor’s school.  I can’t think of a better way to pay it forward than to provide for the organization that is helping my son succeed.

I could go on and on about what we’ve experienced, but will continue to blog about my sweet baby.  Thank you to everyone who is supporting us through this…you know who you are.