When a Pediatric Developmental Specialist confirms that your child is “developmentally delayed” a series of events take place in the months and years to follow. It is as if a door in the room immediately opens and circus parade of doctors embarks on your child and eventually smothers your family.
The circus pageant begins with blood work. Vials and vials of blood are sucked from your child; finding the vein on that little arm is difficult and never on the first prick. The elephants otherwise known as “specialist” become the main circus act.
Appointments are arranged, repetitive questions are asked…
Tell me about your pregnancy.
Was your child premature?
Did you breast feed?
When did you notice something was wrong?
Tests are juggled to view every inch of your child’s internal cavity. EEG, MRI, Kidney Ultrasound, Chest X-ray, upper GI and what ever else is needed to determine the cause of your child’s delay in what others experience as a normal development.
As the elephants perform, New York State enters the spot light of the circus tent and the balancing act begins. The front door of your house is transformed into a revolving wheel through which physical therapists, occupational therapists, speech therapists and special educators enter on a schedule through out the day. This is known as “Early Intervention.”
The therapists perform their educated magic tricks on your child. Strangers assure how fortunate you are to have therapy arrive so early in the act, otherwise known as your child’s life. You are promised that their magical treatment every hour twice a week may stop the digression of your child’s development.
Hope is on its way!
Learn what they do!
Do what they do!
Your child will soon be “normal.”
The circus performance becomes your way of life. Choice is not an option when you desire to do what is best for your child. Obligation, confusion, the speed of life turns your thoughts inside out and your emotions catch you off guard at the strangest moments.
The dreaded thought eventually enters your mind…
Where is my“normal” baby?
Why is this happening?
It took a while for me to see the good in my circumstances. I did not accept how unique and extraordinary my life evolved over night. I did not recognize Colden for who he was at first. I did not bond with my baby as most mothers of newborns naturally connect. I had too many other responsibilities, people meddling, and stuff to fix.
The awakening came in subtle waves. I remember the first time I experienced the warm flowing feeling of love rise up in my body. With time, I realized that this feeling meant appreciation. This initial sensation of gratitude grounded me far deeper then the chair I sat in at the time.
Colden’s first meeting to review his IEP was conducted in the home of a petite, bubbly young girl, his daycare provider. A team meeting consisting of Colden’s group of therapist met to set developmental goals for him. The daycare provider started her own family at a young age after falling in love with her high-school sweetheart.
Originally from Long Island, she was down-to-earth with a tough-girl edge and the gift of gab. There was never a doubt in my mind about her excellent care afforded to Colden; she naturally displayed such loving affection for all those around her. She had baked chocolate chips cookies for the guests sitting around her kitchen table and had dinner simmering on the stove top. The atmosphere was warm and welcoming with the wood stove burning and the calm adults interested and ready to begin the meeting.
Each therapist shared their insight into Colden’s behavior and rightfully prided themselves on their hard work. They shared what they experienced and listed future therapy goals. It was at this meeting that the sense of appreciation enveloped me. In awe I looked around the table at each person, each therapist.
Their acts were sincere.
It was no longer a circus.
Bree, Colden’s physical therapist, Patty, Colden’s occupational therapist, Mandy, Colden’s speech therapist, Pam, Colden’s special educator, Jordana, Colden’s daycare provider, my mother, Colden’s grandma all cared for and loved Colden.
People, who hoped, wished and wanted Colden to succeed. People who once they hugged Colden had easily fallen in love. It was at this session that I realized how unique it was to have theses people in my life.
Perhaps the parents of a “normal” child may not even know that these people exist. It was then that I allowed myself to appreciate the good people.
— BY SANDRA SPINELLI, Penned on November 6th, 2010