Most of my pals reminisce fondly about that time in their life when they were wishing for a baby – planning for their little bundle of joy, the ecstasy when they first heard the words “pregnant,” the total awe when they met their child for the first time. The miracle of birth is something so many of us dreamed about. Nothing is more precious and amazing than the moment that blessed baby joins your family!
I remember learning I was pregnant again when I was 30. My husband and I were “over the moon!” My daughter Lauren couldn’t wait to meet her baby brother and our extended family was excited as well. Amidst all the planning and prep for baby, I remember undergoing prenatal testing to evaluate for several genetic disorders, all considered rare. Autism was never even discussed back in that time, just a short 14 years ago. All the tests were negative – the coast was clear!
Perfect baby Jeff joined our family and we heard the magical words we had longed to hear: “CONGRATULATIONS! It’s a healthy baby boy!”
That first year with Jeff was “by the baby books.” Developmental milestones were hit and he was healthy and happy. Approximately 90% of TACA families report the same thing – baby’s first year was “normal” and we all assumed it would stay that way. Why wouldn’t it?
We did all the right things, followed all of the doctor’s advice. We breast fed as long as possible then switched to solid food when the time was right. We wrung our hands as we let our babies cry themselves to sleep to “achieve independence.” We never missed a well baby visit and most of us held our babies in our arms as they got each recommended shot.
Despite doing all the right things, normal started to disappear. Well before Jeff’s 2nd birthday, he started losing words he had been using, became incredibly clumsy, stopped sleeping through the night and started having frequent horrible smelling, paint-peeling diarrhea.
The absolute worst thing however, was the loss of his incredibly cute personality. His constant smile was replaced by constant screaming. Where did my son’s smile go?
There is nothing scarier than a healthy child disappearing from you right before your eyes. Nothing. I would never wish this on anyone.
It took almost a year of doctor’s appointments, frustration and confusion before we knew what was wrong with Jeff. We finally got a diagnosis: Autism.
Many parents have written about the pain of an autism diagnosis. Leaving the doctors office with no advice or referrals for help. Drowning in tears and wondering “What happened? It was all going so well.”
I am often asked by friends and people I meet if I saw the signs of autism early on? I can honestly say no. Some ask me why I am so active and why TACA got started. The answer is simple: “My life with my child did not start this way. Jeff’s life did NOT start this way.” Regression was excruciatingly painful and horrible for all involved. I can only imagine how it must have felt for Jeff, for all of our kids who live through it.
I often wonder if my child was born with a medical condition or had a devastating, life-threatening diagnosis, would I feel differently. Would I be more accepting? While some families report their child had symptoms of autism since birth, a much larger group of us watched helplessly as our child disappeared.
We are so vocal because it was so dramatic. We are so loud because we need to be heard. We want to scream “It didn’t start this way. This is not where we started. PLEASE NOTICE WHAT IS HAPPENING TO OUR CHILDREN. Please help.”
Meanwhile we painfully watch our children deal with day to day life in such an unfair way.
We are terrified because autism prevalence was not at 1 in 91 children 20 years ago. We are so driven because we need to fight for every ounce of help we receive. There is an army of us fighting this war: fighting for awareness, fighting for resources, fighting for services and medical care, fighting for action, fighting for a future for our kids.
We love our children. Nothing is better than celebrating a Jeff victory. He fights and works so hard compared to his peers. And I am so happy and blessed to report that his smile is back! He has the BEST attitude. He has moved a mountain in his progress. He is my absolute hero. I know his dad and wonderful sister feel the same way.
If you are reading these words and wonder why families affected by autism are so tense, so focused, so vocal and so very, very passionate, I will tell you. It’s because this is not where we started! We didn’t start here. Most of our families started with a story book pregnancy and typical child. Ask us. We will show you through our photos, through our videos, through our stories!
And then something happened.
If there were just a handful of us, perhaps you would just give me a hug, say you are sorry, and be thankful it didn’t happen to you. But there are not a handful of us; there are well over a million parents in the United States sharing the exact same story.
We fight and care so much because our children are counting on us. They are counting on parents to lead the way towards research, fundraising, better therapies and treatments, greater awareness and uncovering every tool possible to drive positive change for them, our children.
We have a mantra at TACA, created by an amazing dad of two kids on the autism spectrum. “Some of our families have been told to put their child in an institution. We’re hoping for Harvard.” We say this everyday – to remind us what we are fighting for: A brighter future for our kids.
Because this is not where we started……………