In any job there are certain tricks of the trade. When you work in IT like my spouse, you learn to think in code. When you teach high school English like I did, you learn a different kind of code – how to interpret silence and which body language translates to “I am texting under the table.”
A Full Time Job
While parenting is a joy, it is also a job. You are CEO of the household and through putting in endless hours of overtime (including weekends), you learn the inner workings of your child. You know the look right before they are about to cry. You know the exact temperature at which they will eat macaroni and cheese. And if you are a parent of a child with special needs, you are also a physical/occupational/feeding/speech therapist, a mechanical engineer of adaptive equipment, a diplomat in IEP meetings, a lawyer in insurance claims. You are, to put it simply, an expert on your child. This is why it is so daunting to hand them over to someone new.
Being Charlie’s Expert
I recently received an email from my son Charlie’s special education teacher at school. He reported that Charlie was in so much pain during his toileting change that he wouldn’t stop crying. I responded, “Hand him a blanket or a book to hold on to when you lay him down,” and then smacked myself in the forehead for not conveying this information sooner. This teacher was new. He didn’t know that Charlie’s cerebral palsy includes a startle response when he is laid flat on the changing table. He thought Charlie was hurting, but really he was stiffening out of reflex and crying because he is used to having an object in his hands to temper the transition.
Once at our developmental clinic, a resident doctor who had never met Charlie mistook the shaking in his ankles for a seizure. He was about to page neurology before I told him that “No, that’s clonus. He has had that his entire life.” Like the special education teacher, he made an assumption from his general experience. But my experience is anything but general. It is specific to Charlie.
I know to check for a fever by feeling the back of his neck, because his forehead never gets warm. I know to hand him his iPad when the world gets overwhelming and he needs a break. I know his favorite brand of chicken nuggets and I know that he likes math and English better than science and social studies because that homework is simpler to answer on his adaptive communication device.
The Necessity of Others
This is why new people are hard. It has taken me years to learn my son and this person has only just met him. How am I to convey the reams of knowledge I’ve accumulated over his lifetime? I used to panic over new paraprofessionals at school or babysitters or nurses at the various clinics. Then one day, Charlie came home with a note taped to a Rice Krispie Treat in his backpack that read, “Charlie’s new favorite snack!” Charlie saw it and immediately signed “more.” The new paraprofessional had stumbled upon one more thing to add to the list of food Charlie could eat. Someone other than me had discovered a Charlie trick! In this case, the novelty of her worked in our favor. This has happened countless times since – the bus driver learned an easier way to lock the brakes on his wheelchair, the babysitter brought a book that became his favorite, the new feeding therapist found a spoon he will actually use.
These people I did not want to let in have unlocked parts of Charlie that I could not unlock myself. Yes, I am the expert on Charlie. Yes, new people have so much to learn when it comes to our children that it can be exhausting. And, they also offer the opportunity for us to discover something new in our children. Because of their fresh perspective, they stumble upon things we never would. It’s risky and it’s also often wonderful.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
