A Puzzling Disorder

 When our identical twins were born, we were the happiest of parents.  Upon having their first physical, we were told that the girls were the picture of perfect health.  They were born at 37 weeks, weighed 6.1 and 6.11, and were given a 10 on the apgar scale.  We were sent home after 4 days with smiling faces and two babies in hand.

 As every mother of multiples knows, the first few months were a blur.  But after the initial adjustment, we settled into life with twins.  As the months progressed, we were noticing something different about our girls that we did not see with the growth of their typically developing 3-year-old brother.  They rarely smiled or looked us in the eye.  They didn’t reach up to us to be picked up or held.  They didn’t coo or babble.  We discussed these concerns with our pediatrician during the girls one year physical.  He patted us on the back and sent us out the door telling us that twins were usually delayed and the girls were probably developing some kind of “twin talk”.   I thought it an odd thing to say that they were developing twin talk when they had no talk at all.  Trusting our doctor, we carried on with our daily life expecting to hear words at any moment.

 Eight more months passed and nothing had changed.  No words and the girls were still not walking.  At their 18-month check-up, the new doctor we saw was shocked at the delays she was observing.  She made an appointment for the girls at our local Developmental Evaluation Clinic.  After the evaluations, our lives were forever changed.

 Our daughters were given the diagnosis of “Autism Spectrum Disorder”.  We were not really sure what that meant. Unlike other childhood disorders or disabilities, there is no guidebook as to what to do for a child with autism.  We were on our own to find the best possible ways to treat our girls.  They were enrolled in Early Intervention services provided by our county.  They received one-on-one play therapy and speech therapy weekly. We implemented special gluten-free, casein-free diets.  Then came Applied Behavior Analysis, additional speech therapy, not covered by insurance, floor time techniques of interactive play and picture exchange communication.  Unable to afford the $60K per child per year ABA schools, we placed them in our public pre-school system, hoping for the best.

 Autism is a brain disorder that affects a person’s ability to communicate, to reason and to interact with others.  Autism is more common than childhood cancer, cystic fibrosis and multiple sclerosis combined.  Yet it is the least funded in the governments search for a cure.  It is also a lifelong disability.  One out of every 166 babies born today will develop some form of autism.  The cause of autism remains unknown.  Bad parenting does not cause autism and children with autism are not unruly kids who choose to misbehave.  Some signs of autism are spinning objects, rocking, hand-flapping, head banging, little or no eye contact, severe language deficits, uneven gross/fine motor skills, difficulty expressing needs, acts as if deaf, unresponsive to normal teaching methods and aloof manner.  If you suspect your child has autism, immediately see a doctor for a diagnosis and treatment.  Early intervention is the key to success later in life.

 With countless hours of therapy and love, Emily and Elizabeth have turned a corner in their treatment.  Emily said, “Mommy” for the first time on Christmas Day 2004, she was four years old. The girls are taking gymnastic classes to fine tune their gross motor skills.  They are smiling and responding to their name.  They can count to ten and say a few new words each month.  They are interacting with adults and some children.

 Autism is like a puzzle.  You find a new piece that fits and add it to your work in progress.  The puzzle could take a lifetime to complete, but when you are finished, you can step back and look at the beautiful picture that each piece of that puzzle created.