As parents, if there is one thing we know in this life, it’s that our baby is perfect. Just look at him – so beautiful, so clever, so unique. My baby is going to grow up to be a grade-A student, talented musician, star athlete, heartthrob, and Harvard graduate. One just knows that their baby is special, only just beginning that long, fulfilling, exciting life ahead of him.
Yes, my baby is perfect, healthy, and just as I always dreamed. But, when somebody tells you that your baby is not “perfect,” that there is something wrong with him, he will never be normal and life will never be the same, there is a pain that stabs a parent’s heart unlike any other pain in existence. Basically, it’s like the life itself inside your body punched a hole in the world through the front of your chest.
I was doing some online research one day in December of 2005 when I came across a list of the early signs of autism. One could say that’s when I saw my own first sign, and it read, “Autismlandia Ahead,” a place you have heard of but knew nothing about and definitely had no plans to visit.
No pointing or waving by nine months, no babbling by 12 months, little to no eye contact, no response to their name when called, preferring to be alone, intense fixations with inanimate objects such as spinning wheels on a toy car or ceiling fans revolving, and repetitive self-stimulating behaviors.
I got a strange sensation as I took my time in that slow, dense moment before I turned toward my little boy sitting near me on the floor, spinning his picture books up close to his face, an activity that he loved to do for long periods of time. I approached my next sign, “Now Entering Autismlandia.”
With Diego now 15 months of age and not having met most of the developmental milestones on that list, I fought the instinct to discard my suspicion and retreat into a temporary state of denial, because I knew in my breakable heart that something was wrong. And I was right. There was the unmistakable sign ahead, “Welcome to Autismlandia.”
What ensued was a multitude of obstacles for us, beginning with the pediatrician whose advice was to “wait and see,” because he was still so very young and even still, it takes months of evaluation to diagnose a child with autism. Next came the insurance company, followed by waiting lists for a clinical evaluation. And after months of Early Intervention services like speech and occupational therapy, when the day finally came and what I already knew was finally confirmed, I, like most of the other parents new to Autismlandia, moved through the next series of tasks a parent must complete in moving forward.
First, you cry. Maybe even a lot. After all, although the love of your child does not diminish, you had some hopes and dreams that need to be grieved in order to move on. Then you get yourself together, spend all your free time researching everything you can about how to help your child, you buy a dry erase board to keep up with the sudden complex web of appointments with doctors and therapists who are now your new best friends, and then, you do something else equally important – you find a parent support group to help you make sense of it all and guide you as you take your first steps down the road that they have already begun paving for you.
When a mother of twin autistic 10-year old boys called me, I listened to her advice about treatments available, books to read, and all sorts of valuable information. I can’t recall any of it now. I can still recall, though, the last words she said to me before hanging up – words that I held onto for years, words that gave me the perspective I needed to keep going.
“It gets better,” she said. “You will be happy again.”
Now, many years later, it is better. I am happy again. And knowing the signs earlier on and quickly responding to them gave my child a chance to reach his potential. I could go on about how progress can be slow and how excruciating it is to watch your child struggle to tie a shoe or build a tower of blocks. I could list the hundreds of little wonderful things most parents get to take for granted, for example, hearing their child say “I love you Mommy,” which I waited five years to hear and which some parents will never get to hear their child tell them.
Knowing the early signs of autism is extremely important for parents of young children. Studies confirm that the earlier a child receives treatments such as speech, occupational, and behavior therapy, the better the prognosis. That little brain is exploding with developing neural pathways that can be built and strengthened leading to a better chance of developing speech, fine motor and social skills, and sensory functioning.
Now, as a source of support and an advocate for other parents new on the autism journey, I listen to their similar experiences, point them towards the best specialists, recommend the best books, and help them through the process of grief and overwhelming upheaval autism can thrust upon the lives of a family. There is, of course, something I never forget to say to that mom before I hang up the phone – the words of hope, of absolute truth spoken to me at the beginning of my own autism journey: “It gets better. You will be happy again.” Because it has to, because it just does.
For more information about autism and for more information about the early symptoms of autism, visit www.autism-society.org.
April is Autism Awareness Month.
By Jean Perry
